25 April 2010

Error Preceeds Truth

 'In all science, error precedes truth, and it is better that it goes first than last' Hugh Walpole

Previous blog entries over the past three or four months, both here and elsewhere, have called upon science to prevail in the endeavor to further identify and understand any correlation between XMRV and ME/CFS.  The blog entry titled 'The Topography of Scientific Inquiry' and 'The Topography of Scientific Inquiry - Part 2' address the necessity of producing replication studies when a new scientific discovery is made, for the purposes of verification.

At this stage of the game, there continues to be dispute over the findings of the original paper published by scientists at the Whittemore Peterson Institute, National Cancer Institute and Cleavland Clinic.  There is a lot at stake, after all.  Money is always a factor, careers will potentially be made or destroyed in the research field, medical arena and even in the journalism profession, based on who covers the story and what bias they take. Insurance companies stand to increase payouts, and at the very center of the debate, the quality of life for those individuals who have a diagnosis of ME/CFS, could be set to improve. Dramatically.

In January 2010, in response to the initial study published by the Whittemore Peterson Institute, McClure, et al published research they had conducted which failed to replicate the results published by the Whittemore Peterson Institute. It has since, however, become increasingly apparent that the McClure et al study failed to replicate the initial Whittemore Peterson Institute study. This also appears true of two further studies, including one published in the Netherlands by Van Kuppeveld et al, which also published a failure to detect XMRV in individuals with a diagnosis of ME/CFS.  Since these publications, the Whittemore Peterson Institute have produced press releases which suggest reasons why none of these studies can be deemed as replications, due to the use of different equipment, different procedures, different cohorts.

But what about if these UK studies did find evidence of XMRV in their ME/CFS cohorts?

'We would also like to report that WPI researchers have previously detected XMRV in
patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the
completion of their own studies, as they requested. We have email communication that
confirms both doctors were aware of these findings before publishing their negative
papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive
patient sample to determine if his testing procedures could in fact detect XMRV in a
positive blood sample before he published his paper. We wonder why these materials
were not used in his study which also failed to detect XMRV.'(Whittemore Peterson Institute, 2010).

'The negative studies were technically flawed in that their methods were demonstrated NOT to be capable
of detecting XMRV. Their patient populations likely did not satisfy CCC criteria and they looked only by PCR on genomic DNA the least sensitive way of detecting XMRV. To date none one has attempted to replicate our study. It is very clear that the prevalence of XMRV in UK is NOT ZERO and that XMRV has been detected in CFS patients in the UK. (Whittemore Peterson Institute, 2010).

Meanwhile, we are beginning to see the emergence of the initial findings of the Whittemore Peterson Institute into the mainstream.

We are now reading about bans being put in place on blood from donors who have or who have had diagnosis of ME/CFS. Please refer to the blog entry dated April 23 2010, 'A Question of Blood'.

A study published in the Journal of Virology, titled: Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs, indicates that the use of antiretroviral drugs such as Tenofovir, AZT and Raltegravir, currently used in the management of HIV, would possibly be effective against XMRV infection (Paprotka T, 2010).

The pharmacutical company, Glaxo Smith Kline, has announced that they are funding a replication study that will attempt to replicate the Whittemore Peterson Institute's XMRV findings.  “Ethics board approval is pending, but we expect this study to begin shortly. GSK will obtain specimens for this study from [patients diagnosed by] Hunter-Hopkins Center (Charlotte, NC) as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman  (Philadelphia) in order to sample subjects from diverse geographic locations. Samples will be provided anonymously by the new SolveCFS BioBank, recently funded by the CFIDS Association…” (Prohealth, 2010).


Paprotka T, et al (2010). Inhibition of Xenotropic Murine Leukemia Virus-Related Virus by APOBEC3 Proteins and Antiviral Drugs. Retrieved 25 April 2010 from http://www.ncbi.nlm.nih.gov/pubmed/20335265

Prohealth (2010). Dr. Lapp’s News Re: New XMRV Study, ME/CFS Blood & Tissue Bank, Ampligen® Study. Retrieved 25 April 2010 from: http://www.prohealth.com/library/showarticle.cfm?libid=15255&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

Whittemore Peterson Institute (2010). Letter to McClure. Retrieved 25 April 2010 from http://www.wpinstitute.org/news/docs/DearDrMcClureaw4.pdf

Whittemore Peterson Institute (2010). Q&A with Judy Mikovits. Retrieved 25 April 2010 http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf


  1. New replication studies are fantastic; I am excited about the BioBank and GlaxoSmithKline's involvement. There are still serious and valid questions as to why XMRV wasn't located in the other studies that weren't replication. If XMRV really is implicated in CFS, it shouldn't be this remarkably difficult to find it in patients without exactly copying the WPI's work. In fact I'm not sure how XMRV can be implicated with *only* replication studies and not investigations into other CFS populations in other areas.

    Since Judy Mikovits has now moved into bizarro-land by presenting at the AUTISMONE conference and making remarks about vaccines causing autism, it is more important than ever to have other studies by neutral parties confirming the WPI's work. I am growing more and more distrustful of that institution, especially when a lab they partly own happily provides useless and expensive XMRV tests to credulous patients.

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  3. Interesting thought. But completely wrong. There are serious and valid questions. And, while waiting for the other pending studies, whose research do you treat with respect, and whose do you treat with a "well, could be but let's see"?

    On the one hand you several institutions with no vested interests (WPI, Cleveland clinic, NCC). Top scientists, among them the original discoverer of xmrv. An active research program of only 2 years and they are making major strides (which will be true even if the xmrv association is shown to be anomaly). Patients clinically tested for various immune and other biological abnormalities. Careful, unhurried reserach and peer review.

    On the other hand you have groups not taken seriously by the world's experts in this illness.

    Study #4: (Kuppeveld). Has been "researching" for 20+ years without a meaningful contibution to patients. Unwilling to accept the patient selection critieria of his world-leading peers preferring instead an anachronistic and universally discredited case definition. Patients that picked themselves as having a serious disease from a phone interview. Patients carefully selected to remove any that may be suffering a viral infection. (Funny way to find a virus). Fast-track peer review that breached BMJ's own guidelines.


    Study #2: (wessely) you have:- disregards evidence-based treatments in favour of his personal preferences; even thought hese personal preferences have been researched and clearly shown to be ineffectual and harmful in some cases.

    "Researching" for 20+ years without a meaningful contribution to patients. A person publicly documented as compromised by financial conflicts of interest; unwilling to accept the patient selection critieria of his world-leading peers, preferring instead an anachronistic and universally discredited case definition. A person publicly documented as having abused the publishing system to manipulate opinion; with publicly documented and unanswered charges against him of collusion in mengele-like abuse of patients.

    Study #3: (Kerr) - researchers with the credibility and respect of their world-leading peers. This one needs the most explaining.

    Considering the above, *not* treating WPI's work with respect is not only non-sensical it is spiteful. Though not recommending it, they have generously made their test available to those of the public that "have to know". They understand that sometimes the desire to know is profoundly iomportant to the patient's psyche.

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  5. A foremost expert on CFS, Dr. Jacob Teitelbaum, has just put out a new book called Beat Sugar Addiction Now: http://endfatigue.com/. It is written in a simple style and outlines his easy to follow, multi-step plan. He begins by identifying 4 main types of sugar addicts and then outlines a specific plan for each type of addict to follow. He explains how sugar plays into the problems suffered by each kind of addict and goes into detail when clearly and succinctly explaining how to beat the cravings. While Teitelbaum does not provide recipes or meal plans, he does give guidelines for healthy eating and lists of recommended foods as well as the glycemic index for many common foods.This book would probably be helpful not only to people attempting to lose weight, but also to those with illnesses such as Type II Diabetes, Fibromyalgia, and Chronic Fatigue Syndrome, just to name a few. Though Teitelbaum is a medical doctor and is clearly coming from a medical background, he writes in layman's terms and creates a book that will be easily understood by most people.

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  7. Just FYI - There have been positive xmrv findings in the intial phase of testing in the cfsbiobank study.